I am hoping some or many of you could help me. As many know, my PM group isn’t the greatest, but let’s put that to the side. My question is simply, how many of you have a pain level of 7-10 every day, 24/7? I have a pretty high tolerance to pain from what I’ve been told by many of the nurses during and after the procedures and surgeries I’ve been through in my life. Then I’ve been reading these posts. Some people talk about what seems almost a reprieve for days at a time! Is that true? A couple of folks have eluded to the fact that if they are going to be in pain, they would rather being doing something more than just laying around. I find that amazing as pain kicks me so hard all the time that just getting up to do a few things is beyond what I can imagine most of the time. I wondered also, how long were those of you who are on a main med with BT meds in pain before the doctor started you on that kind of system? I’ve been on Hydrocodone 10/500 for 5 years and then they went from 4 to 5 pills per day last year. Then last month went from the Hydrocodone to Oxycodone 15mg 4 times a day. I’m on Zanaflex 3 a day and have been for the last 4 years with no change and one of the worst things I deal with is back spasms that scream! The Zanaflex helps, but it doesn’t last nor do the pain meds. So, I just wanted to know if I am some kind of a mutant who is in pain constantly and there is nothing to do but to be in pain or is it just that my pain is not being addressed properly? I want to have a life! I’d like to know what it feels like to be free of pain for a full day! Even an hour at a time! What does that feel like? Or if not free of pain, because it’s called Chronic Pain for a reason! but to have your pain level at a 6 or below? I don’t mean to be complaining, really I don’t, but I am seriously interested in the answers. One last thing; I filled out the pain forms from Chronic Pain 101 and when I showed them to the nurse practitioner she looked at the front, turned it over and looked at the blank back side then gave it back to me without even really taking in all the work I had done on it!

Thanks for taking the time to read this.

Catz4

I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4

No Catz you are not a mutant at all , I beleive you are a person with extreme pain issues and its clear you are suffering a lot .As a pain sufferer I do have time when the pain is not as intense , but I beleive Chronic can mean different things to different folks .To me Chronic means habitual , not constant . I think with you its more the constant definition that applies , and I hope all the wonderful people here at HW who expierence that same constant severe pain will log in abd give you the benefit of their wisdom in this matter , and I have no doubt at all that they will . I'm so very sorry your expierencing such constant and severe pain my good friend , I think you should always continue to look for answers with the PM and everywhere .I;m certain the HeakingWell family will give you every advice they can and I hope I've helped somehow . Please stay strong as you can , your friend and brother mikelHIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment .Medecines - Oxycontin , percocet , Celelbrex , lasix .

First, i am so sorry that you are going through this. second, i am sorry that you aren't getting any relief from your pain.

i promise you, i was on here feeling the same thing a few months back, and i'm not try to answer for other people, but i know there are many on here who are in your pain, and there are many people who cannot get up and do anything either.

now, i just had my first and longest "break" from pain in 2 years. i've had a day here and again, but not really. in this pain, i averaged, still over a 6 in pain daily, and that ranged from a 9 to a 3 throughout the day. now, i know i have been one of the people that says i'm going to be in pain moving, or i'm going to be in pain moving around. that is not true for me on all days, and only when i'm in "remission". otherwise, forget it, i cannot move. i have been on the couch since Thursday night. Except a little sleep.

ok, i wanted to say that i was on hydrocodone 10's before they moved me to oxycontin. i used percocet for post op pain, but hydro for the other. my pain dr would not want me to be in the pain that you are in. myself, personally, i tend to lie to my doctor because i do not want to go up very high on pain meds. but i'm on 120 mg/oxycontin, 20 mg/oxycodone, and soma. i also take other meds

i started abilify and it seems that triggered a remission, but as i had a feeling it was only temporary. the things that i have been able to do have been only temporary and i have not been able to do them since all of this started with me 2 years ago. never before did i understand the whole ideology that you have presented here. and i have demonstrated here and read myself.

but i would like to say that you have been great support for me, and i'm more than happy to try and return the favor, please be more of an advocate and tell your pain dr this is no more acceptable. has your blood pressure been going up with your pain? he should see you if it is out of control. also, can you go to the er, tonight? for me, i'm allowed to go to the er without it violating my pain contract. maybe it is time for a new dr.

are you able to change dr's, meaning is there another dr around your area? ok, this is enough for now, but i'll be watching for you.

First, you are NOT alone. I too have been out of commission for several days because of pain, even though I did go out once (only because I had to for my family). I can understand how you feel when you are in the grips of spasm and can also understand not wanting to get off of the couch or out of the chair. My recliner is my "home" lately.....well for the last year. Anyway, I can only say that I had a "small pain break" about two weeks ago and felt much better for several days. It was a 3-4 on the scale. The rest of the time my pain is a 8-10.

Of course I am NO Dr. and I cannot speak for all, but getting "before" the pain with the meds helps me alot. By that I mean really doing what PM told me and taking meds even when I don't feel like I need them yet. Otherwise, it's like waiting too long to eat lunch and getting a horrible headache. The headache takes FOREVER to go away because I didn't do what I knew would help before it got bad. That's where I am today!

Cat, noone here can take away the pain that you are in, but we will be here for you to cry, vent, and just express the feelings that come your way. Each day is different. Some days are off the couch for a while and some are projects, projects, projects. I keep living for the project days. Please keep looking for the answer.Formerly PrayingForRealRelief...

No, you are not alone. I also have a high tolerance to pain. On several occasions I have had medical professionals tell me that I have one of the highest pain tolerances that they've ever seen, yet I live at a constant 7-8 on the pain scale. I don't get any breaks. At times the pain gets worse, but it rarely ever gets better. The best I've been in 3 years was maybe a 5-6, and that only lasted for a couple hours, with the exception of one diagnostic nerve block which got me down to a 3 for about 2 hrs.

Pain medications don't work for me - it's something about my particular biochemistry. I've just about been through them all. I do take dilaudid at night, but it doesn't really decrease the pain, it acts more like a preventative. My pain is always worse at night & sleeping intensifies the pain even more (up to where I wake up screaming at a 10 - that is if I even manage to fall asleep) because of all the eye movements involved with sleep. The dilaudid helps keep me at say an 8 & in turn get a couple hours of sleep, but I have to take what is considered massive amounts of it just to get a couple of hours of stability.

You're right, it is extremely hard to function when you are in pain at all times. I've learned to take things just an hour at a time. It's not easy, but you can only do what you can do. Don't give up. You have to be your own advocate. Keep fighting for yourself!

Good evening. It is good to hear from you. I am sorry you are going through such an increadibly hard time right now. It must be every so frustraiting with your PM and his nurses. If there is anyway, anyway atall... It would be worth your while to get a second opinion about your pain management. More importantly more diverse pain management options and treatment planns.

You asked, who has "remissions" ? I dont. With medicines I stay a constant 7 to 8 and that is best we can achieve for my "comfort". When I am at a 10, something else is going on and tests need to be done. Something new has been damaged. When I continue with my day at level 10 (I have 2 small children and no family. Husband is 12 hr night shift) I know all the while that I am damaging my body further. What can I say? My children neeed to eat. Basic needs have to be met. I never guessed in a million years my parenting skills would be tested this way..... but, it is what it is. I say if you can clear your schedual and lay down / get up as little as possible when you are at 10, do so. My doctors are all very clear. As I continue with my day at a level 10 I am damaging my body further. More often than not, in irreversable ways. No bones about it. ( I know not punny) When it is too much I literally pass out or vomit... so, needless to say this is better, this constant 7 to 8. Much better than 10 by far.

I think in your case.. perhaps you need to seek out different pain management options. Please, dont toss away your pain journal. Keep at it. Many (most) doctors have their own pain journals, and hopefully you will come across a doctor that finds the information VERY useful. I know mine sure did. But, he had his own that I had to fill out every 4hrs.

I hope you can find a few moments to relax tonight. I am so sorry you have to endure through so much *hugg* You are in our hearts.

*hugg*

dani

Two roads diverged in a yellow wood,And sorry I could not travel bothAnd be one traveler, long I stood

You might not ever be pain free, but you should have much better pain control than what you have! There is no excuse for you having pain like that! Why doesn't your Doctor have you on a long lasting pain medication? Like Oxycontin or something? And if the Zanaflex isn't controlling your muscle spasms then why doesn't he try you on another antispasmodic? Some days are better than others for me, but I do not sit around all the time in pain above 5 or 6, maybe for short periods of time it will get really high and I will take the Percocet for break through when that happens, but for the most part I can functional at least alittle with my pain levels, I can't do everything I use to do of course, but I am not writhering in pain all the time either! And if you are, then your Pain Doctor needs to be working with you to get it under control at a more manageable level!

I am glad you posted, you are not alone her, we all are here to support you!

I suffer from 3 different types of pain: 1) associated with muscle spasms 2) whole body nonspecific pain and 3) neuropathic pain.
Prior ro PM involvement I suffered pain levels 6 - 10 throught the day. The worst pain was associated with spasms and post spasms.
After several years of PM experiementing to find the best combination for me. I now live with a range of 2 - 5, with an occasional 9 or 10during horrific spasms.
My current pain manangement plan:
Baclofen in an intrathecal pump (you 1st have to get the spasms under control before you can treat the pain.
Morphine in the intrathecal pump (after trying everything, including massive doses of fentanyl, plain morphine in the pump was the most successful)
Dilaudid 4 mg - for B/T pain. My PM will Rx me either 90 or 12o tablets per month depending on my need.
* Diaphramatic breathing - breathing exercises to get you mind off of pain.
* Imagery CD's - to redirect your mind from your pain.
KEY - an understand and good Pain Management Specialist. I have been though several to get to where I am today. Am I satisfied with my pain control? Yes - for the 1st time in many years. My specialist is associated with one of the top teaching institions in the country and has lots of experience with a wide range of different types of pain.
Stella Marie Chronic Pain Forum Moderator
Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator). Extra fun little toys and gadgets; O 2 generator and assorted wheelchairs, walkers, canes, and orthotic braces. Med - too many too list or even care about!

I'm with WB in wondering why your doctor hasn't prescribed an extended release med for you. This would give you a more continuous means of controlling your pain levels, then prescribing something for break through pain. I use an extended release med every 8 hrs but also have meds for breakthrough pain, which I will experience when I do something out of the ordinary or I will take it before shopping so I won't get so sore while in the store. The weather tends to play a big roll in my pain levels also so the bt meds also come in handy for these days.

My pain levels range between 5-8 throughout the day. Normally mornings and afternoons are my worst times. As far as the muscle relaxers/anti-spasmatic meds go I've tried 5 different ones so far and none of them have really helped much other than to make me sleepy. I've found that tylenol tends to help me with the overall aches the most.

Has your doctor ever tried you on lyrica or neurontin for the fibro or diabetic pain? I use 600 mg neurontin 2xday and it helps with the muscle spasms in my neck. They are still there but not as severe as they were before.

I know I do tend to work through the pain. I do feel better while lying down but if I lie down too often or for too long I get stiff & sore and really don't want to do anything then. If I keep busy, it takes my mind off the pain and keeps me from stiffening up. I will stay busy getting everything done that I want done then I will take my bt meds, go take a hot bath and lay down for the rest of the day.

I'd have to agree with others here that if your doc isn't willing to work with you maybe it's time to start looking for a new one. Good Luck!!!---Jag---

My HW family, Thank YOU! (I'm sorry this is so long)First of all, I realize fully that I will probably be in pain the rest of my life. The big question is what quality of life can I lead? I believe we are all in pain all the time, but apparently those of you who are using a medication that allows the use of a BT medication seem to be doing better than those who don't. (me) At any rate, I said at the onset that I know from you all that my PM group is not helping me like they could or should. That is horribly apparent. I guess I'll try to answer questions and comments from the first one on down. Mikel my brother, thank you for letting me know I'm not a weirdo/mutant! I do feel that way sometimes. Tabitha, I'm so blessed to have been some kind of help to you because you have been that to me. Also, you've been hurting, but not as much at times which is a real blessing. I see that you too are on a daily med then a break-through to help with the pain. Also I had found another PM Clinic, but after a long drawn out thing, they wouldn't accept my insurance. I have been trying to work out how to get into another pm clinic without causing issues in case I have to stay where I am for whatever reason. And just to let all of you know I am going to keep working on finding a new pm clinic and doctor. As I type this, I get angry that this doctor hasn't addressed me and my pain with more compassion and concern. Yes Tabitha, my bp has been high as my pain is up of course. I thought about going to the E.R. this morning as I have been racked with pain. Muscle spasms so intense that I had to wake my husband to help me get to the restroom at 3 am. I didn’t go to the e.r. because the pain was so intense that I didn’t think I could stand the car trip. Retiredmom…thank you for letting me vent, cry and feel; I need that. My pain is mostly the same all the time. I have woken up the house screaming out in pain on those rare occasions that I am able to sleep. Yes, I get that! Also Skeye, I’ve been UA’d at the pm clinic and had very little opiates in my system! I had no idea why so my hubby bought several tests for me to test myself. Invariably, my opiate level was very low! I find that extremely odd. This oxycodone is helping slightly more than the Lortab, but only slightly. I will try not to give up and to instead keep going until I find someone who is willing to listen to me! I too vomit and pass out when the pain is too much Dani! Again, I’m glad to know I’m not the only one! Your *huggs* are so kind and soft. Thank you. White Beard, there was kind of an air of protection towards me in your post and I could tell through your writing that you truly mean that I am not alone! I really need that, the support! Stella, wow! I can’t even imagine being at a 2-5! But that is my goal!! I appreciate you telling me about different types of pain and the levels of pain you go through. Jag, if I had one clue as to why they won’t put me on an extended release med, I’d maybe have a clue about the pain management clinic I’m in. On my last visit 3 weeks ago, I specifically asked for an extended release and the quick reply was, “No!” I am terribly allergic to Lyrica! My eyes begin going in different directions and a rash that was maddening broke out all over me. Neurontin just didn’t work. I go back to the pm clinic on the 23rd of this month. I can tell you for sure that I am going in mentally armed against the intimidation I feel every time I walk into that clinic! Each of you has given me a piece of yourself to carry in my heart that day. Thank you! You are an amazing group!! Mikel, thank you so much for encouraging me to make the step to write this post. Catz4I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4

Oh Sister , I feel and I ache with you and for you , you are such a wonderfully caring person , That when I think of you I smile , and I wish with all my heart you will find some relief , that is my prayer for you.; mikelHIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment .Medecines - Oxycontin , percocet , Celelbrex , lasix . '

Well, I said this before to you and will say it again. If you have access to your health insurance online, I would go there and print out a list of PM dr and call everyone of them to verify they still accept your insurance and are accepting new patients. I would then ask what is their requirements are in order to get an appt with the PM dr. Then once I got that done, my next visit would be to my PCP and say here is the list of PM drs on my ins and these are the ones taking new patients and I need a referral from you in order to see a new PM dr. It is not that hard to do, maybe a little time consuming, but well worth it when you find a new PM dr. If you cannot come up with one close by then travel a little to see one it can be well worth it. Be sure to make sure any new PM dr does rx meds as well as procedures. Some PM drs do procedures only and will not rx meds.

Another post of yours indicated to had taken your grand daughter to Vanderbilt for medical care and you were really pleased. I would be calling that place and see if they have PM drs available and see what it takes to get an appt there.

Most of us have had to advocate for ourselves in finding proper PM care, this is not uncommon at all. Not all PM dr are created equal and that is why we take matters into own hands and do what it takes to get the proper care that we need and deserve. Iit just takes some work on your part. No doubt the longer you stay where you are the longer nothing will happen for you. By staying where you are at is only cheating yourself. Take care.

I think I can tell you why your UA showed so little opoid, because you are not taking very much! That is also why your pain in not controlled! They are not giving you adequate amounts to controll your pain. How long have you been taking pain meds, and have they changed or increased the amounts? You said you have been taking Hydrocodone 10/500 4 or 5 times a day for the last 5 years, and just recently they changed that to Oxycodone 15 mg 4 times a day? Is that right? That is really not that much for as long as you have been treated. Over time your body becomes tolerant and the meds need to be increased to be effective! Extended release meds are much more effective in controlling pain, because they keep a more level concentration of pain meds in your system, over a longer period of time. I am not sure I understand why your PM is so against giving them to you. But I would definitely be making sure that he knows that he is not adequately keeping your pain under controll and you want him to do something, and do it now! There is just no excuse for you to be suffering the way you are! If he can't do the job, or he is not willing to, then maybe you need to find some one who will look out after you. After all that is what you are paying him for, isn't it? I really do wish you well Catz

Thank you all for the support and the ideas. I hope you are all doing well and that life is easy on the body today. I thank you for the kind words and those of you who have given me words of advise in the past, please know that I am not ignoring what you've said, I just am taking tiny steps towards things like a new pm group. There are some doors that have been opened and I am very excited to get away from the drs. that have for some reason or another made the choice not to help out more aggressively. Again, thank you all.Catz4I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4

Hello CatzYou are not alone girl. We are in the same boat and are here to help you. My pain is a 10 all the time and I have been suffering for 10 years with these terrible headaches. Just in Feb I have been trying a new medication via an iv at home. I have used my faith to keep me above water.Please hang in there and perhaps seek a new pain dr.if possible.

SUZANE

Chronic, severe and continuous bilateral temporal headaches since April 2000.

Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.

Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.

Suzane, Your kindness and your non-judgemental words really touched me tonight/this morning. Thank you so much. You appreciated the fact that it isn't a simple run to the next pm group. I do have an appointment on the 8th of April to see my neurosurgeon because he has been taking care of my syrinx and he sent me to this pm group. I want to ask him to send me somewhere else. He would do it I believe. I have been "put down" in another post when I said something about my pm group being rotten. The words that came back were harsh and embarrassing as were the words in one of the posts here. That is why I thank you for the kindness. I also know all about headaches. I have spent every week with at least 1 migraine since I was 12. Now my sweet 11 almost 12 year old, now has migraines all the time. She is able to take migraine meds whereas I have terrible problems with those meds. I've tried them all. I how your headaches get less and in fact I hope they go away, but I know the the monster that is a headache and I'll do what I can by at least saying a prayer for you. Take care and let me/us know how you are, ok?Cat(z4)I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4

Catz- I send you healing love. Please know you are not alone. I also suffer from 24/7- 365 , /8/10-10 /10 pain and have for going on 9 years and have recently begun my search for another pain doc. My current doc will only prescribe the bare minimum and even suggested that I learn to live with the pain. My pain is all head pain and I have tried all the experimental implants and injections and such that he suggested yet he seems remiss to prescribe larger doses of pain meds. I read how so many of you are on Dilaudid. When the pain gets so unbearable I find I have to go to the ER where they give me a shot of Dilaudid. I have asked my doctor for a script for Dilaudid for breakthrough pain but he will not claiming it is a "slippery slope" as one can get tolerant of the med. We have tried everything else but for some reason he will not write for this med. I currently tried one new pain doc who was pretty much of a joke suggesting I go swimming or maybe motivate myself to get a job( the only thing I have have dreamed of the past 9 years is going back to work and finishing my Masters), and tried yet a third Pain doc who is now sending me for physical therapy ( something that had never been suggested for head pain before. It seems to be causing more pain than anything else but I'm trying to be positive and going through with it). All I am saying is, if you aren't happy with your doc, try to find another. Try to remember that they work for us. You have put up with your pain too long and you deserve to be treated better. Please look into finding a different doctor, one who will care for you. Headpain is a terrible animal. I share your pain and send you healing thoughts and a cyber icepack( it seems to help when things get really bad)Catasick and tired of being sick and tired